Every child and every parent has their own unique story and challenges. For our daughter Jada that was being born with a severe heart condition called atrioventricular septal defect (AVSD), which means that she was born with a huge hole in the heart which had to be fixed. At seven months, I had to take Jada to Cleveland in the United States to get surgery done, because it could not be done in Jamaica at that time.
We had to take out a loan, it wasn’t easy and she had a 50/50 chance. But fixing a heart problem can help avoid complications linked to the development of a child with Down syndrome later in life.
Today she’s doing much better. She went to a regular basic school at the time so she grew up with her peers up until she was placed into a special education unit and she’s at the primary level now.
Having a child with Down syndrome I think in more ways than one has changed how I look at life. Jada has taught me patience and the absolute importance of putting your own child first, because she requires a lot of attention. But the support I get from my husband makes it easier.
With Jada, she’s loving, she’s so innocent, fun-loving and she doesn’t take things so seriously. So, having her has helped us not to look at things so seriously just to enjoy life to the fullest.
I’m the principal of Alley Primary School in Clarendon where my experience as a parent has helped me at work. I believe that having a child that has special needs helps make you better able to manage a school. I am better-placed to deal with the different situations you experience as a principal whether with a student, teacher or parent – and there are a lot – because I have been there myself.
The biggest challenge is to ensure every child feels included because for children with disabilities people often shield, or even worse, hide the child from society. But what we have learned over time is that to help them develop in life we must make them aware and let them get out there.
With training experience, and certainly empathy, you can identify who among the children also has challenges and to reach out to them. A lot of people who perhaps aren’t involved in education might think that every child can be taught the same way but we know that is not true and that we must be more child-friendly.
As families, one of the things we must do is accept when our child has a challenge and seek some sort of support. We’re members of the Jamaica Down Syndrome Foundation which is there for parents like us and we support one another. That mutual support can be important, especially for single parents, because it can be overwhelming.
Having Jada and her being a part of us for 11 years now we wouldn’t have it any other way. Life is about growing together and it’s natural for us now. I admit it was a burden initially, but we don’t look back to that or think about what might have been. Like my husband says, God gives special people special gifts and you must love your child no matter what the condition. Jada is our gift.
We met Judith as part of a disability data over view workshop staged by UNICEF and the Statistical Institute of Jamaica (STATIN) in April. The workshop was aimed at identifying issues around increasing Jamaica’s capacity to collect data on persons with disabilities and to better inform data-driven decisions.